tag:blogger.com,1999:blog-5139051348630003510.post3231571894102922212..comments2024-01-19T10:34:42.896-05:00Comments on AIDS Drug Assistance Program: Our Commitment to TransparencyADAP Advocacyhttp://www.blogger.com/profile/12953388477622949653noreply@blogger.comBlogger1125tag:blogger.com,1999:blog-5139051348630003510.post-13177482685386785952018-04-27T10:20:42.141-04:002018-04-27T10:20:42.141-04:00I think there are sometimes many false impressions...I think there are sometimes many false impressions and flat out myths around how funding works for advocacy organizations and charitable non-profits.<br /><br />We know we are not the only organization that receives project based grant funding or direct sponsorships from Pharma corporations. Especially in HIV, Pharma sponsorships and grant funding provide necessary resources our government simply won't fund and our communities can't afford. Pharma corporations are important partners in our advocacy, not immune or even avoidant of criticism from patient advocacy organizations. Our's is a dynamic relationship with these corporate sponsors, often with these sponsorship funds being the vehicle in which patient advocates can deliver direct, constructive criticism to these partners on filling gaps on research and development of programs to better meet the, partnering on lobbying work, and working to better understand where we have failed. Very specifically, we see these types of dynamic conversations at our annual conference where Pharma sponsors send liaisons to discuss concerns with our community and advocates. Health departments and government are loathed to admit failures due to punitive funding designs and Pharma corporation funds help us better understand where we have room to improve, reach more patient needs, and bring light to failures government is happy to overlook in the name of "looking successful" in combating the epidemic. <br /><br />Additionally, Pharma grants tend to go the way of "clearing houses" (think AIDS United) to limit influence among community based patient advocacy projects. Pharma is not unaware of the power of funding and often seek unaffiliated partners in disbursement in an effort to minimize fear of funding losses influencing outcomes or final work products.<br /><br />While there's certainly room to improve the culture of access to care due to high costs of medications, our experience has not been one where Pharma seeks to "shut us up" but of an urgent desire to talk about the nuances of that process and funding being an honest commitment to empower advocates and create more access for grassroots advocates to become engaged in that conversation. Our experience has been one where Pharma sponsors have "put their money where their mouths are" quite literally with regard to their statements on a commitment to community. <br /><br />We aren't saying "love Big Pharma", we're acknowledging that "partners" don't always agree on approach, sometimes have competing interests, and, just like with interpersonal relationships, the nature of being a true "partner" means having hard conversations and sharing an investment in a specific outcome.<br /><br />-Jen LawsJen Lawshttps://www.blogger.com/profile/12184029573245482115noreply@blogger.com